TY - JOUR
T1 - Dutch Parelsnoer Institute-Cerebrovascular Accident (CVA) Study
T2 - A Large Multicenter Clinical Biobank with Standardized Collection and Storage
AU - van Os, H.J.A.
AU - Ruigrok, Y.M.
AU - Manniën, Judith
AU - van Dijk, E.J.
AU - Koudstaal, Peter J.
AU - Luijckx, Gert Jan
AU - Nederkoorn, Paul J.
AU - Oostenbrugge, Robert J.
AU - Visser, M.C.
AU - Kappelle, LJ
AU - Algra, A
AU - Wermer, Marieke J H
N1 - Funding Information:
Funding statement: PSI was founded in 2007 with a five year grant from the Dutch Government. From 2011 until now PSI is funded and facilitated by the Netherlands Federation of University Medical Centers (NFU) and its member institutions, independent of external funds. Additional funds from governmental sources, industry sponsors and charity are used for the analysis on the existing data and the expansion of PSI with new diseases.
Funding Information:
Keywords: Stroke; harmonized standards; clinical biobanking; translational medical research; health innovation; technical and organizational interoperability; international security and privacy standards Funding statement: PSI was founded in 2007 with a 1謀ve year grant from the Dutch Government. From 2011 until now PSI is funded and facilitated by the Netherlands Federation of University Medical Centers (NFU) and its member institutions, independent of external funds. Additional funds from governmental sources, industry sponsors and charity are used for the analysis on the existing data and the expansion of PSI with new diseases.
Publisher Copyright:
© 2018 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/.
PY - 2018
Y1 - 2018
N2 - The Dutch Parelsnoer Institute-Cerebrovascular accident (CVA) Study is part of the Parelsnoer Institute (PSI), initiated in 2007 by the Netherlands Federation of University Medical Centers (NFU). PSI is a cooperation of all eight Dutch University Medical Centers (UMCs) and aims at building large prospectively collected datasets with uniformly and standardized storage of biomaterials for complex diseases. Currently, PSI covers 18 disease-specific cohorts called ‘Pearls’, and this number is still growing. One of these cohorts is the Stroke or CVA Pearl. For each of the cohorts, PSI offers the UMCs an infrastructure and standard procedures for storing the specific biomaterials in their certified biobanks. Clinical data are stored in a central database after being pseudonymized to ensure patient privacy. For the Parelsnoer Institute-CVA Study, blood for genetic analysis, serum and plasma are collected according to nationally agreed standards. Currently (November 2017) the Stroke Pearl has stored blood samples with prospectively obtained clinical data of around 6000 patients in all UMCs combined. Blood samples and data are available for all researchers with a methodologically valid research proposal.
AB - The Dutch Parelsnoer Institute-Cerebrovascular accident (CVA) Study is part of the Parelsnoer Institute (PSI), initiated in 2007 by the Netherlands Federation of University Medical Centers (NFU). PSI is a cooperation of all eight Dutch University Medical Centers (UMCs) and aims at building large prospectively collected datasets with uniformly and standardized storage of biomaterials for complex diseases. Currently, PSI covers 18 disease-specific cohorts called ‘Pearls’, and this number is still growing. One of these cohorts is the Stroke or CVA Pearl. For each of the cohorts, PSI offers the UMCs an infrastructure and standard procedures for storing the specific biomaterials in their certified biobanks. Clinical data are stored in a central database after being pseudonymized to ensure patient privacy. For the Parelsnoer Institute-CVA Study, blood for genetic analysis, serum and plasma are collected according to nationally agreed standards. Currently (November 2017) the Stroke Pearl has stored blood samples with prospectively obtained clinical data of around 6000 patients in all UMCs combined. Blood samples and data are available for all researchers with a methodologically valid research proposal.
KW - Clinical biobanking
KW - Harmonized standards
KW - Health innovation
KW - International security
KW - Privacy standards
KW - Stroke
KW - Technical and organizational interoperability
KW - Translational medical research
UR - http://www.scopus.com/inward/record.url?scp=85098513622&partnerID=8YFLogxK
U2 - 10.5334/ojb.41
DO - 10.5334/ojb.41
M3 - Article
AN - SCOPUS:85098513622
VL - 5
SP - 1
EP - 8
JO - Open Journal of Bioresources
JF - Open Journal of Bioresources
ER -